Sunday, September 13, 2009

She wouldn’t eat her french fries. I should’ve known something was up when the fries just sat there on her plate and she demanded rice. Who the crud prefers rice over fries? Certainly not Cami. Not ever before that night.

“She didn’t get much of a nap in today,” Erin explained.

“No?” I was surprised. Cami uses up twice as much energy as the rest of us doing the simplest of things, like walking and being super cute. She needs her beauty sleep.

“No, she didn’t nap at all, actually.”

“That’s weird.” Weird, sure, but it did explain why she was now eating so lazily. She was nearly nodding off at the table.

I left the restaurant full and guilty. It had been at least two years since I’d eaten one of those pounds of death (supposedly also known as burgers) by myself and I wasn’t very hungry to start with. On the way I home, Erin and Elora decided to watch WIPEOUT before bedtime. Cami was obviously exhausted, so there’d be little trouble getting her to bed right away.

All I wanted was to crash on the couch and read a magazine. If I laid on my back, gravity could do its thing and my protesting stomach and I could make like Europe in 1491. No need be ignorant of the shape of the horizon if you can alter it.

I set Cami down on the ground as soon as we entered the house and she dashed (in her own way) for her bedroom, following her big sister. Erin and I stayed in the living room, discussing my faux pas at dinner (lesson learned: don’t play iPod games at the table).

No, wait.

That’s wrong. We debated my table manners in the car on the way home. The conversation we had in the living room I can barely recall at all because everything that happened after leaving the restaurant is obscured by the memory of Elora cackling in the hallway.

“That’s funny! Hahahaha! That’s funny, Cami!”

Erin and I tried to continue our conversation but in the back of my mind I was curious. What was so funny? Elora just kept laughing. Erin’s curiosity moved more quickly than mine and she finally went to see what was going on. I started taking keys and change out of my pockets for my big lay down.

“Brock! CALL 911!”

“What? Why?” Dang it, was my first thought. I really wanted to play Guitar Hero tonight. Instead of just grabbing the phone, I rushed over to see what was going on first. The Digital Guitar Gods demanded I find out if there was a chance Erin was overreacting.

Erin was crouched low over Cami, panicking. Cami had clearly fallen, having lost control of her body. I knew this sight well. A year ago we’d been on our way to Los Angeles when by chance I looked over at Cami in the backseat, only to see her staring directly into the sun.

Then I noticed that she wasn’t looking into the sun at all. She couldn’t, not with her eyes rolled into the back of her head. She was shaking, too. Every limb was just flopping about, as though an out-of-water fish had taken up residence inside of her skin. Now, in the hallway, she was doing it again.

I called 911. I had never done that before. Cami’s Doctors in San Francisco told us that if she ever had another seizure then we should call for an ambulance immediately. Sure, the first one was a febrile seizure (a common attack of the brain brought on by a sudden fever than happens to lots of young kids), but with Cami it could always be more than that. A seizure could be the sign of something horrible. A deterioration of her already puzzling physical and mental health.

“911. What is your emergency?”

“My daughter, she’s having a seizure. She’s very small and—“

The operator confirmed my address and assured me that an ambulance would be there in minutes (they were). I gave real-time updates on the phone as Cami stopped shaking after about a minute and then lay very, very still. Erin stayed right with her. Knowing what was coming, she ordered Elora into her room to change into pajamas. She didn’t know where Elora would end up in all this, but it sure wasn’t going to be the hospital. Plus, it kept her busy.

The dispatch on the phone assured me that Cami was progressing out of her seizure just fine. I hung up the phone and went into the hallway. Erin scrambled to get ready to leave, putting her shoes back on. I took over with Cami, scooping her up into my arms and sitting with her on the floor of the hallway while she moaned and cried softly. I hadn’t cradled her with such trepidation since the day she was born. The look of confusion on her face broke my heart.

The dog and the cat were agitated. The sirens were getting close. That’s when it hit me.

“Erin! The dog! They’re here and the dog is out!” Elora walked by, freshly dressed in her P.J.’s and stepping over us to make her way to the drama-free living room. “Elora, put Plato in his kennel!”

“How am I supposed to do that? I don’t know how! Sheesh.”

“Erin!”

“What?” Erin finally shouted back.

“They’re HERE. The DOG!” Plato is a good dog, but he likes to greet all new visitors with a bark and a climb. That wasn’t going to happen. Erin got him into the kennel not five seconds before the men in their we’re-here-to-help-you suits knocked on the door.

Elora answered. “Hi!”

“Hi, sweetie. Can you tell us what’s going on here?”

“My sister fell down. She had a seizure in the hallway.”

They came in quickly, kneeling with speed and care in front of us. I thought of E.T. and how he was lying next to Elliott as the scary men in hazmat suits rushed in to take him away. Cami had just started saying her second word that week. “Da” or “Dada.” Now this? How fair was that? Can your brain be damaged by a seizure? Even E.T. has a bigger vocabulary than her. There would be no awesomely huge tubes leading us from the door of the house to the ambulance. I love tunnels; seems like I always have. At least since 1982. Thereabouts.

Several questions were asked of me about Cami’s current state, all of which I answered on autopilot. I made sure to appear calm, but inwardly there was one thought that overtook all others, Please don’t let this be the one that takes her from us.

As a matter of sanity, we’ve accepted in part that perhaps Cami will not be long for this world. If no one knows what’s wrong with her, then what’s wrong with her could be far worse (or far better) than any of us know. The joke has always been that Cami is just aging slowly—that she’s like some throwback to early Biblical times and this is just what a super long life looks like at the beginning of it. But, if she’s not the missing link of aging, then where does that leave her? How long can a person whose body develops so little and has her attendant complications expect to live? No one knows.

Erin jumped into the ambulance with Cami and I headed back into the house. Elora was on the phone, but handed it over quickly. Kristie had followed the ambulance down the street on the way to her home right behind us. She called as soon as she could after seeing that it stopped at our house and graciously offered her services. I thanked her and asked her to come by and grab Elora.

Elora, bored with listening to one side of a conversation she cared little about in the first place, was on the computer playing a game. After getting off the phone with Kristie, I scolded her.

“Elora! Now…now is not the time to be playing on the computer!”

“What? Mommy said I should!”

“S-she did?” Of course she did. That’s because your mother is a genius.

By the time Kristie had gotten to our house I had called both grandmas. My mom volunteered to take Elora, and Kristie was tasked with taking her over there. I knelt down beside Elora before she left to reassure her that Cami would be okay (as if I knew any such thing) and that she hadn’t done anything wrong by laughing at her. There was no way she could understand what was happening.

The first time this happened Elora was already in Los Angeles ahead of us and spent much of that night sobbing. Now, seeing it firsthand, it was different for her. We said everything was going to be fine and she believed us. I was grateful for that.

By the time I got to the hospital, the ambulance had already arrived, but only just. My Mother-in-law Lynn was there, too. We embraced and waited for our chance to go back into the ER to be with Cami and Erin. When we finally got back there, Cami was lying face down on top of Erin, who was lying on her back on the bed, her face red with the trauma of the past hour.

Cami was still moaning, softly. The seizure had taken her normal behavior and thrown it back about three years. There was a time when she was just a lump. A cute lump, but still a lump that didn’t do much other than sleep and stare. The pain was forcing her back into that. It was just…just the pain, that’s all.

After the doctor and nurses got the I.V. in her (and after a lot of screaming, of course) the lump insisted on sitting up and rising back to life. I pulled out my iPod, treating her to a silent home movie I had edited together in which she is the star. She also got to play as much Awesome Ball as she wanted. With strength that had been beyond her reach just an hour earlier, she shook the virtual ball as hard as she could, laughing as she sent it careening around the virtual room. For some reason, bouncing balls are hilarious to Cami, real or unreal.

“Hi,” she turned to me and said.

“Hi,” I said back.

Postscript: Cami had very low energy for the rest of Labor Day Weekend, but she was lucky enough to finish out her recovery at home as we left the hospital that same night. It turned out it was a febrile seizure. Tonight I got her some french fries from McDonald's. She ate them all."

Oh my Jill. We had no idea this went on on Labor Day weekend. We're so relieved that Cami came home the same night and could recover at home. Bless Erin and Brock for handling this so compently. Our prayers are certainly with them. Brock's description was amazing. Love, Great-Grandpa and Susan

Oh my goodness. My heart is full right now. I love you guys and am so sorry to hear about what happened to sweet Cami. You have described all of this so well Brock. I could just picture what was going on and I can't imagine how heartsick you must have felt. You are in our prayers.

I'm so sorry about the 'not knowing' with her condition too. That has got to be one of the worst things a family has to deal with.

We've been through those seizures (our daughter Ellie suffers from Hydrocephalus, and Jayden suffered two with fevers), they certainly are not fun to witness. I think it's so good that Elora didn't know at all what was going on and only thought her little sister was kidding around. And I love how that situation was handled.

Erin...so now she says bye?! I am so happy to know that! That makes 4 words....3 of them just in the last week. When she left here last night and we kept saying Bye to her, I could tell she was thinking about it.

How stressful! My heart goes out to Brock and Erin. I guess you folks are just learning to take and treasure one day at a time with that little girl. Wow! What an experience. And you all handled it so well. I'm impressed!

My older son used to hold his breath until he passed out. I was fine with that--he passed out, he began to breathe again, easy enough--until he was a year old and began to hold his breath so long that he would have seizures after he passed out. His were called acidonic seizures and supposedly would not hurt him, but I couldn't bear to stay in the room as his eyes rolled up, his face turned blue, and his whole body shook, before returning to awareness, lethargic and confused. Once the seizure began, his dad would stay with him and call me when it ended.

My heart goes out to Brock and Erin. I remember how it scared me, even after the doctors said his seizures weren't damaging. It would be even more difficult if Jacob's health had already been precarious. My prayers go out to Cami and her parents. She is precious and she is theirs for eternity!

You don't know me but I got the link to your blog a while ago. This story was scary to me at first b/c I didn't know what would come next. It took me a while to read it through the tears. You are a wonderful grandmother and can't wait to give my mom the opportunity to act just like you! Cami is a sweet little girl and her video just warms my heart.

Oh....this post brought back so many memories. Seizures knock the wind out of them and they sleep alot afterwards. I feel their pain & share their feelings of uncertainty & acceptance of what this means for them.

The worst thing about seizures is that they come without much warning. Brock & Erin are doing an incredible job as parents and their little ones are theirs for all of time & eternity. I know the Lord will always give them strength & support as they navigate through this journey.

"Charity is accepting someone who has let us down; or resisting the impulse to become offended when someone doesn't handle something the way we might have hoped...The best and most clear indicator that we are progressing spiritually and coming unto Christ is the way we treat other people..."-Marvin J. Ashton